I just spoke with Mass General. Talking again next week to someone else. Today I was assessed for eligibility for their pre-clinical stem cell trial. I am not eligible bc my PD is not advanced enough. They are looking for 10 PWP as soon as possible. Phase 1 clinical to follow in a couple years. Those who participate in the pre-clinical will have the greatest chance of being in the next phase. This was already done through every phase in a retired doctor named George Lopez. Follow the link and on the right side there is a button to email them. State your interest and that you are able to come to the hospital once a year for a couple years and that you are responsive to Levodopa.
How do clinical trials expect to get participation without marketing/advertising? I know foxfinder was supposed to tackle this but I feel like it's failed. In this day and age, trial should have queues of ppl waiting to participate. Hidden , I know you're eager to improve the situation. Maybe thats an area worth investigating.
Is anyone aware to any other alternative to foxfinder? Foxfinder is just a poor implementation of a good idea. Has anyone attempted to do their own version?
I want to but if someone else would do it that would be excellent! If you do it, I will help you if you want. Just tell me what you want me to do and if I am capable of it, I will do it. We need it!
I haven't really looked into it. I just know that foxfinder isn't what I'd personally like to see in a trial finding site. We could just go to them but they're never gonna change it. The overheads for them would be big. I don't know if someone has came up with an alternative. Investigating that would be the 1st step. I might spend some time next week seeing how feasible it'd be and if we could actually make something better.
I think the easiest way with zero funds would be to start a PD Trial Finder facebook group and update with trial status'. There are a lot of PD facebook groups on which we could notify of status changes with a link to the PD Trial Finder facebook group. What is your opinion of that idea? I like cost free, visibility, and ease. I have not done it bc I am still a newby learning the ropes of how trials work and PD in general.
No, if I was gonna do it, I'd do it right. I'm a software engineer so making the site wouldn't be an issue. Foxfinder is fine but it could be so much better. Personally I don't think Facebook approach would solve the problem which I think exists. However don't let me put you off doing thst approach. 😆
I didn't know you are an engineer. Had I known I would never have suggested facebook! FB was my maybe better than nothing approach but a website is what is needed! And, you could have advertisers to make it more worth your while if you wanted to. What can I or we as a group do to best support you in this?
Let me spend some time during the week n I'll do some research to see what's feasible and to understand why other ppl haven't done it n what foxfinder is missing. Ill message you 1:1 as I doubt ppl wanna keep reading this 😅
I sent an email communicating my interest in participating in the pre-clinical and hopefully the trial itself. Only sent it out on Sunday. No response yet.
I received a prompt response and subsequent phone call. If I was on CL I would definitely do it. They are only making the pluripotent cells. No implantation yet
Sorry about the delay. I did receive a response about one week or a week and a half after I sent in my information to expressed my interest in participating in the trial. They said they would keep my information but they weren’t taking people from outside of the Boston area. I’m about 1000 miles outside of the Boston area, so that leaves me out.
I emailed and heard nothing. I live in Maine...about two hours from Boston. Wish they would be clearer about geography and not waste our time. That, or write back!
I am the “hidden” that posted it a year ago. It’s nice to have someone interested.
After some frustrating delays with the clinical trial. Doc and Kwang-Soo have fixed some minor hiccups and are about 4 months away from beginning(again) the clinical trial. They are incredibly frustrated with how long the “process” takes- but will continue to fight. I’ll post again as soon as we get the final go ahead from the FDA.
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